My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

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Yesterday we turned in my 24 hour urine catch to the lab for the test for heavy metals. Since we live within a quarter of a mile of what the EPA called one of the worst toxic waste sites they ever had to clean up, we’re very anxious to hear the results on that one. Obviously, there are several metals that could cause the PN, so this is a key test. I started to just let DH take the container back by himself, but it’s a good thing I didn’t. They had such a hard time drawing blood Thursday that one of the vials had clotted, so they had to draw more blood from me yesterday. That would have been terrible, to go to the doctor next week and not have all the tests completed.

I’m finding the oddest places that I’m having trouble navigating with the walker. The door to the bathroom at the hospital lab was so heavy that I couldn’t get it open and get the walker through it, too. DH had to get up and hold the door for me. Then, when I got in the bathroom, there was no hold bar — in a HOSPITAL bathroom! I couldn’t believe it! We got the phone number of the maintenance department from the lab people. That was the only number they could give us, figuring they would know who we would need to contact to complain about the bathroom not being compliant.

We went to an old Wendy’s for lunch, and it took 2 people to hold 2 sets of doors open at the same time to get the walker through the vestibule doors, the way they opened on each other. That’s crazy!! Nobody in a wheelchair would be able to get in that place alone. They’re going to get a call, too. We’ve been talking to managers for years about maneuverability issues we saw pertaining to wheelchairs, but we’ve obviously missed some in places we never took my mother. You just don’t notice things like that until you are confronted with them yourself.

Norma Khan was on American Airlines, flight 77, on her way home to Reston, Virginia, on September 11, 2001, when that plane was hijacked and aimed at the Pentagon. She was 45 years old. She had worked as an organizer for fundraiser programs for non-profit organizations, and had been heavily involved in the Reston Multicultural Festival, held each September in Reston. She was a single parent with a 13 year old son, Imran.

Several people have left memorial comments on various 9/11 sites, praising Norma as a warm, loving woman who cared about people. She was a good mother to her son. There is no way that I can properly pay tribute to this lady that I did not know, but the many lives she touched during her lifetime are a living tribute to her that will last forever.

If you’d like to read more tributes written by bloggers to honor the 2,996 people who died tragically on 9/11, you’ll find the whole list here.

I went to the Neurologist again yesterday, and was disappointed with the visit, to tell the truth. I know he’s a busy man, because we purposefully picked the very best Neurologist we could get. But I feel like he’s so busy that this whole process of diagnosing is dragging on interminably, because the appointments are so far apart, and so little seems to be accomplished each time I see him. It’s that last part that has me disappointed.

He wanted us to get the full study from the doctor who did the EMG, so he could read through it. If his nurse had called us prior to yesterday’s visit, we could already have gotten it, and he could have had that already done. As it is, he still doesn’t know if he will want me to undergo that test again, so I’m feeling very frustrated. We went and got the report and brought it straight back to Dr. S’s office, and I have another appointment in two weeks.

He did say, after looking at the MRI that we had taken to him of my last lumbar vertebrae series, that he now agrees with the Orthopedic doctor that my Peripheral Neuropathy was not caused by my Degenerative Disk Disease. So, it’s not my brain, and it’s not my back.

He had a lot of blood tests done, and I have to do a 24 hour urine catch on Sunday/Monday and return the jug to the lab Monday. That’s to test for heavy metals, since we do live within a quarter of a mile of an EPA toxic waste site that’s cleaned up now, but we lived here many of the years the factory was in operation.

It’s looking more and more like he thinks I have Parkinson’s, even though I’m not exhibiting a lot of the typical symptoms.

Of course, I’m still holding out that it’s just from all the stress I’ve been under and still am under. I’m writing this post from my 101 year old Daddy’s house. He usually stays by himself, and I come in to fix breakfast and supper. Meals on Wheels brings lunch. We call him during the day, and that is usually enough, but he was awfully weak this morning and hurting in his back, so I’ve stayed with him today, and I’ll spend the night here.

This whole business of every step feeling like I was dragging my feet through molasses started sometime last October, but our DD was in the hospital then, and I was staying with her, so I put off doing anything about it until March. The epidurals the Orthopedic Dr. prescribed did a great job of getting rid of the pain, but the walking did not improve. So here I am, and it’s September, almost a year later, and I’m still wading through mud with every step. Let’s just say my patience is wearing pretty thin.

Another dear saint from our church family has gone on to be with her Lord today, after a long bout with cancer. The last month has been almost totally a vigil by family members, attending her wasting physical body’s needs, while she was no longer aware of them. We’ve been through the same thing twice ourselves, with my mother and my FIL, and to a lesser extent, with my MIL, who died in Intensive Care, rather than at home under our care. Those last days, weeks, or months, as the case may be, are very hard on the family emotionally and physically, but after time has passed, I have found that those days actually help with the healing process of grief. You can look back and know that you were there with them in their final hours, that they were at home, where they wanted to be, with family near.

I’ve grown to be a much more spiritual person for having the privilege of watching three loved ones breathe their last breath on earth, knowing they were breathing their first in Heaven. I understand things on a different level now, not necessarily that I can articulate, but every thing and every one is appreciated more. I hug more. I cry more. I laugh more. I’m more.

The TV’s back on, I’m back on the computer, the cat is satisfied that there are no strangers in the house, so everything’s back to the status quo.

It sure was wonderful, though, for today and yesterday afternoon on, to have our younger DD home for a quiet visit. I think it did her as much good as it did me. We didn’t go anywhere, and we really didn’t do anything. We just sat on the sofa and chatted, if the spirit moved us, or just enjoyed doing nothing.

She leads such a hectic life, between work and chauffeuring three active children here and yon from one practice to another, plus her part of the housework. Being still, with nobody hollering Mama! was probably quite restful for her. And I just enjoyed being with her. For all that it came because of serious illness, I did get to spend a lot of time with our older DD this last year, and I was missing spending some time with our younger DD, too.

Nothing has changed, leg wise. My digestive system continues to behave itself, and I’m eating normally now. Of course I’m still on the high powered medicines. I’m to report my progress to the Gastroenterologist’s nurse tomorrow, and she’ll tell me what to cut back on next.

We watched a little bit of the MDA telethon today. I thank God for two healthy children, who have grown into loving women, who are good people. Both have a strong faith in Jesus, and they are both married to Christian men. All three of our grandchildren are healthy, and they are saved, too. Yes, we have much to be thankful for.

For those parents who are struggling through the anquish of seeing that precious little one be diagnosed with a serious illness, my heart cries out for you. I can’t begin to understand how you feel, but I can pray for you. May God be with you today in a close and intimate way. Amen.

I wasn’t nearly as tired after church today, and I know it’s because I’m using the walker. The distance from the car to my Sunday School classroom, and then to the sanctuary and back to the car is a pretty tiring distance, and there’s no doubt that the walker helps a lot.

Everybody’s being really nice, but the walker is calling attention to me, which is what I was not wanting. It was the main reason I resisted using it to begin with. But, they mean well. About all I can tell them is that my doctor has ruled out brain tumor, and that’s a good thing!! And, that I’m not in pain any longer … that’s a good thing, too!! I thank them for their prayers, only to be stopped by someone else a little farther along the sidewalk, and the whole conversation gets repeated, almost word for word.

Our younger DD is coming today for an overnight visit, at my request, and I’m so looking forward to that. She usually brings the grandkids, and I asked her, if she could, to come sometime by herself, so we could really visit. I hardly ever get to see her, and I really miss her. Neither one of us are big talkers, so I’m not sure what we’ll do, but if we don’t do anything but sit and hug, that’s fine with me.

For the first time since the end of March, I got out my digital camera and took a series of pictures of an item to put on eBay last night. That’s the first time I’ve touched that camera in all this time. I don’t think I could have held it steady much sooner than now, as I was so weakened by my bout of colitis. Anyway, it felt good to actually get a new listing up again, and I plan to get at least one up each day from now on, and hopefully two most days.

My strength has improved some, what with all the exercise I’ve been doing, but my walking is still very shaky. I have a Neurologist appointment this week, and I’m really looking forward to that. I’ve been really patient, and I’m praying that this will be the time for all the tests that will help him figure out what’s wrong with me.

I am so very thankful to God for my DH, who has been so attentive and so supportive through all these months. I don’t know what I would have done without him. I don’t know how people, who don’t have Jesus to hold onto, make it through the scary times that life can throw their way,either.

DH and I had a fairly normal Date Day today. The only thing that kept it from being completely normal was that nobody was having any Estate Sales today within a decent driving distance of our house.

I’ve worked out a pretty good system. I use the online version of our newspaper to find the Garage Sales section, and I search for the Friday sales and the Estate sales. With that tab of FireFox open, I go to our AAA membership and pull up the travel map tab. All I have to do is copy and paste the addresses of the sales into the AAA page, and their program will turn it into a trip map. Once I get a look at the map, I can tell how to rearrange the stops to make it the most efficient gas wise. With a printout of the directions and maps to go by, it takes all the stress out of finding the sales.

We try to pick a different part of town each week, and we know where the good thrift stores are, too, so we’ll always find something we can sell for a profit, that will pay for our mileage and dinner out, at least. We’ve been doing this long enough that we pretty well know which parts of town are likely to have steep driveways, so we avoid those for now.

We’ve been selling vintage collectibles and plush animals and soft dolls on eBay and from our own website now for several years, and it’s been a lot of fun. (In case you’re curious about what we have available right now, you’ll find our shop banners in the right hand column.) I haven’t put any new items up for sale for several months now, as I’ve been so sick, but I’m hoping to get busy this next week.

I’m very glad to find that having trouble walking isn’t going to spoil our Date Day fun. Using the walker worked quite well today. My biggest problem seems to be when I stop and stand still for awhile. If my leg condition turns out to be a permanent situation (I’m still being evaluated) then I’m definitely going to want one of those that has the built in seat. From what I can tell from looking on the Internet, I think I want push brakes, too. If any reader has any experience with different types of walkers, I’d appreciate your suggestions.

My DH fussed at me for apologizing to him for his having to get the walker in and out of the car so many times for the different yard sales. I can’t help it, though. It makes me feel bad that I’m having to inconvenience him. I know he loves me and would do what ever I need for him to do, just as I would do for him. I know that. Yes, I do know that. Saying it just doesn’t seem to help the way I feel, though……. Something else to get used to.

Our DD wanted me to go with her to her Neurologist’s appointment today, so we packed up the walker, with its brand new tennis balls installed, and headed off to the big city. We met her at the doctor’s and I went up with her. I chose not to take the walker, because I didn’t want to be the center of attention. The doctor was extremely pleased with her progress, and she’s dismissed her finally. Her peripheral neuropathy problems started in mid May of last year, so this has been quite an ordeal for her.

We parted ways after her appointment and we spent a pleasant time browsing through Barnes & Noble books. That’s a treat that I haven’t been able to do for over 4 months now. It was fun being able to move around freely with the walker. I did notice that I got tired very quickly if I stopped and stood still to look at a book for any length of time. My feet would burn and sting and get prickly. So we’d move along to another section and browse there for awhile. I thoroughly enjoyed myself!

We ate out at a buffet for lunch. I couldn’t see how the walker would be of any help, juggling a plate, so we left it in the car. That was a mistake. I realize now that I should have taken it in, walked to the food bar and left it to the side. I could have filled my plate, then DH could have taken both plates back to the table, and I could have used the walker to go back to our table. I’ll know better next time.

My legs have been dragging all day today, and I’ve been sighing a lot. I’m just tired all over, and I’m not exactly sure why. It may be the Dyflucan tablet I took last night that’s doing it. I hope it’s something that simple. I’ve been through two bottles of Nystatin, and I still have a little thrush on the back of my tongue, and the rest of my tongue is still coated. All this as a result of the high powered antibiotics it took to knock out the colitis I had up until a few weeks ago.

I had planned on going to church tonight, but it started raining a little before it was time to go, and DH was reluctant for me to get out, after being so tired all day. Oh well, I’ll try again next Wednesday.